As families face the difficult decision to pursue hospice care for a loved one, they often have many questions. What is hospice care? What are the benefits? How will it affect their loved ones? And most importantly, what can they expect from the hospice team?
To help ease your thoughts, here are four tips to help you navigate the hospice care process and provide the best possible care for your loved ones.
1. Believe in Your Hospice Team
Your health care provider will be an expert on the steps to take to keep your loved one pain-free and safe at home or in the hospital. They will work with you over time to ensure that your loved one’s symptoms are under control and that they remain comfortable, whether you’re there or not.
They usually use medications like morphine or oxycodone to treat pain. The healthcare provider can also show you how to perform pain control techniques at home, so you can help your loved ones when they’re alone.
Your healthcare provider will also work with your loved one’s other doctors to coordinate care and ensure you miss no critical information.
They might also assemble a diverse team that includes a nurse, social worker, chaplain, and pharmacist. If necessary, they will also assign a home health aide to help with personal care, like bathing and feeding.
Hospice care is designed for people with severe, advanced illnesses like cancer or end-stage heart disease that won’t be reversed by treatment. They might not prolong life, but they will work hard to provide your loved one with an excellent quality of life despite the disease.
2. Make Room in the House for Caregivers’ Possessions
Sometimes a patient wants to leave hospice care as soon as possible, and that’s their choice. You can help them feel better about that decision by continuing regular visits with them at home. You can focus on things they enjoyed before rather than forcing treatment they don’t want anymore.
Usually, you can suggest getting a health aide to help them at home. In this case, you might still want to put together a small nursing station in another room for everything caregivers might need medications. These might include syringes, blood pressure cuffs, pulse oximeters, etc., plus extra batteries and supplies if they need to remain in the home overnight.
3. Be Prepared for Anything
Planning is the best way to deal with hospice care, but sometimes emergencies come up that are out of everyone’s control.
Some families use an emergency file on the refrigerator (or other easily accessible spot) where phone numbers (and even pager numbers), insurance cards, and medical history information can be stored. Often, hospice caregivers will help you develop a plan like this if they think it might be helpful.
Besides emergencies, you need to prepare yourself for transitions during care. As you might imagine, families are often surprised when their loved one passes away, even if they knew he was dying because of a terminal illness. This could be especially difficult if there were no specific “end of life” with the health care team before he died.
It’s also not unusual for family members to feel relief that the dying process is over. Sometimes they might feel anger at themselves, God, or their loved one for abandoning them. And often, others fear of future events.
These feelings are normal and expected. You can call your hospice team 24/7 without fear of being judged by them if these feelings arise in you after the death occurs.
4. Be Forgiving with Yourself
Remember that grief lasts a lifetime, and sometimes it arrives early. Some experts call this premature grief. You can feel intense negative emotions when this happens, such as anger, resentment, guilt, and shame. You can also go through the different stages of grief. One day, you might feel accepting of what’s happening and then try to bargain the next.
Don’t get too worried about these feelings or emotions as they are all normal. Allow yourself to feel what you’re feeling and express it in your way.
If you’re a parent, remember to let your kids be kids. They might see the world differently than adults do, so encourage them to ask questions about what they’re seeing even if it seems inappropriate to you. If they need some topics removed from their conversation with you, ask them for ideas on what they’d prefer to talk about instead.
Seeking hospice care can be difficult for everyone involved. Still, it’s an invaluable service to help you manage the pain and other symptoms that come with end-of-life care.
